Faces and being important

 

“Obviously it’s not important to you, else you’d have remembered it”…Uh yeah that’s not how it works.

http://andreashettle.tumblr.com/post/157544256183/obviously-its-not-important-to-you-else-youd
And I had thoughts that were longer than my normal length tumblr posts, so I thought I’d return to bloggy-land. I like tumblr for obtaining content, but not as much for creating it.

 

So, in undergrad, we did this weeklong service trip. We got to go do some manual labor, clean up some houses, play in the mountains. It was a group of maybe 20 people. We met a couple times, several weeks apart. Before every meeting, I would study their faces on facebook to try and match them. I’m almost positive I spent more time trying to learn their faces than anyone else in the group. I’ve learned, generally, that most people don’t study faces. I also did give my general face disclaimer–bad with faces, I don’t recognize my boyfriend when he shaves, etc.

OLYMPUS DIGITAL CAMERA
Like seriously, the mountains were beautiful. And there were lots of trains, so I was pretty happy. Since I’m a fan of trains.

At the end of the week, people went around and said best and worst things about the weekend. One of the girls said the worst thing was that I didn’t care enough about them to learn their names. Other people seconded that. I’m pretty sure I spent more time trying to learn names than anyone else on the trip. But my brain does not like to learn faces.

Sometimes I forget my mother’s face. Often I forget my husband’s face. I know this is a regular problem that I face.

My grad school friends don’t really mind. When I met them for the first time, I mentioned it. I started grad school with my brand new (secret) autism semi-diagnosis and general weird-brain-awareness (although I have always known that I can’t recognize faces) and I would mention when I met them that I was extremely bad at recognizing faces. My grad school friends–science nerds–after 4 years of knowing them I can’t begin to tell you how much of nerds they are–would just excitedly ask “oh is that the face recognizing thing?” and then talk excitedly about prosopognasia. One person even asked me if I had brain scans (and what they looked like). Because brains are cool and differences in them are useful (in learning how they work). I like scientists.

*Darn. I was hoping it would embed visually. But it doesn’t seem to be doing that.

 

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telling autistic

Some more choosing-a-lab/grad-school-struggles randomly and when that happens I am not very good at writing at paragraphs or capitalizing or even really going back and editing it but also because I am still sort of mush on this topic and ideas right now. So sorry about that because I know lack of capitalization and even also inconsistent capitalization and punctuation can be distressing to read to me at least so here’s a heads up that it is all sorta meltymushy.

one problem i’ve found that I have with autism
and why i don’t want to tell people
or can’t

because for the longest time i would read stories of kids with autism–because its almost always kids in the stories
and i thought it couldn’t be real
because they sounded just like me–a bit younger often, and with a tendency to be boys—and I was not a boy no way who knows what boys were up to or how I could related to them
so i thought most of it was a new made-up craze
that things were overconcerned and overpathologized when it was just people being people

of course
eventually i realized that actually in these stories these kids who couldn’t really have something Named, couldn’t really all be that different
because it was things I did
things my family did
things I didn’t think at all were unusual because they were woven into my everyday life

that these things were not actual Things That Everyone Does
but rather, unusually unique to me and occasionally family members
and this group of autistic

I would keep reading the stories before I realized
because I recognized something similar
but also reading them trying to figure out what exactly it was that made these kids different

sometimes jealous of the more-overtly-things that meant they didn’t have to talk to people
or somehow were allowed to do things in public I knew that were not allowed but they were ok for them
not knowing how amazingly lucky and accepting my life had been–which is probably one big WHY that no one noticed things about me

and now i’m struggling with some things in school
contemplating telling people to see if that would help
—by people i mean official school people—
(although i don’t know who i would tell since i am not even in a lab)
but I’m afraid they won’t believe me

because just like my family was slow to believe when i told (some of) them
because it was just things that everyone did
i live in a world of science and scientists
and a lot a lot a lot of the things I do are not all that uncommon–at least compared to the general population
there is at least one professor who I am almost positive (upwards of 90%) is autistic too
and there are others with hints
and so i feel like it would be less believed
because the straits stand out less–which is sometimes good
but makes asking for help harder

—well, that and the fact that I don’t have any actual official paperwork of any sort saying i was autistic. probably a flaw at that time that i should have predicted coming up in the future

maybe when i get in a lab officially
i will eventually tell that PI
and help figure out solutions

In general, i’m not very good at telling people
i’ve told one person who asked directly
i have told 2 close friends
i told boyfriend

i wish people would ask directly
that is why i didn’t even tell the therapist/pysch person
because it didn’t come up in any of the questions she asked me

but i think it is very rare that people will do that
it has only happened once

so i probably shouldn’t hope for that

hows and whys

I have to choose a lab and that is no fun because they don’t really tell
you the hows or the whats or the whys and whenever I go to try and talk to
people, they just ask be questions. When what I am asking for isn’t the
questions but the process. What is the process for choosing a rotation. For
choosing a lab to work in. I would like a protocol. I would like some
directions other than “find a lab”. How do we find one? Once we have
identified one that we think we would like to join, how do we go about it.

They say go and talk to the faculty, but they don’t say what to talk about.
So I go in and talk and end up just as confused at the end with no specific
progress.

When I ask how to choose a lab, how to join a lab, they do not tell me.
They ask me questions that lead down a different path. I want to know how
to contact people. I want to know the how about it.

Even if I get the strength and spend days and days making the words and
walking around outside the building to prep before going in with explictly
said words “I would like to join your lab” it does not work. It doesn’t
come out… the words don’t want to listen at all. So I just sort of go
there and nod and murmur along and agree to all the things and say
everything is doing great and run quickly quickly quickly through the
little bit of the script I can still remember. And we end up more confused.
Both of us.

Once I tried to write it down on a post-it note I brought in.

Sometimes they ask me questions I haven’t prepared for and I have no answer
for and I scramble for them in bits and pieces and try to make words out of
things that aren’t words.

I know it is because there are multiple of us trying for the same lab and
there is so much that depends on it on funding and who to choose and what
to do but I do not know how to do it. I do not know the how.

And I’m terrified I’m too slow. I sort of already had one person tell me no
because I didn’t express interest and I don’t know how to show I can
express interest in a clear and obvious way. I know how to do it in the
ways my interest and happiness works. Although the lab I want to join was
the first, when I was less skilled at digging into the problems and hiding
in the data and building a home out of it. I’m afraid the other person or
people trying for this lab will win. Because they know the words and the
procedures and don’t seem to have to prep with words on a post-it note or
walk around and lie down in the grass afterwards to process and figure out.
And they know the words and the ways of people and all I have is the
long-ago memories of the brownies and blondies and other treats I brought
into lab in October November December.

Processing is not my strong point.
People is not my strong point.
Choosing is not my strong point.
Fighting is not my strong point.

Processing processing processing.

Why do I want to join your lab?

I know in the patterns. I know from the part of my brain that doesn’t think
in words. With the following of patterns. Where all the things come from
patterns. I can tell somehow. I know I was happy. I know I liked the work.
I don’t know the how the why the reasons, at least not in words. The part
of me that knows things like this doesn’t know in words, not always, and
there aren’t words or translations leftover.

But that’s not an adequate answer. That’s not a coherent explanation.
That’s not a convincing reason to choose me over someone else. If I can’t
articulate *why* I know, just that I know, it isn’t particularly helpful.

The hows and the whys and the words and the work and the reasons.

A brief rant about brain activity

Everything is all in my brain. Because my brain is the filter through which I interpret the world. Everything is all in your brain. Because your brain is the filter through which you interpret the world. Everything is always in your brain.

In our grad school ethics class, one of the topics was science and religion, and the presenter brought up some brain scan studies done on religious people praying, and how they had specific brain activity when they were praying. One of the people in my class decided to take this to mean that therefore it couldn’t possibly be real and it was just a brain malfunction. That it was proof that all religious experiences were not real.

I did not like this conclusion. Or this logic.

Because it was missing the clear bit of information, which is that everything we experience we process through our brain. I’m not going to argue about religion or God or gods or personal beliefs, because in general those are up to you to decide. But saying that something isn’t real because there is specific brain activity associated with it is a horrible argument. Of course there is brain activity when people are praying or having religious experiences. The presence of brain activity does not make something NOT REAL. Because you experience everything through your brain.

That is sort of the point of having a centralized nervous system.

Just another reminder that autistic children grow into autistic adults

I’ve been seeing so many posts today about autistic children, so so so so many. And that is just from the brief facebook browsing breaks I have been taking when I am supposed to be designing primers at work. I (mostly) have not been actively seeking it out. And sure, children are adorable, and you can put up really cute pictures of them which you can’t really do for adults, but the story is incomplete. (Not to say that autistic children are not important and wonderful, as well.) Autistic children grow into autistic adults.

sleepwakehope 1 in 88 people. Autistic children grow into autistic adults.  TOM WILLIAMS. I thought their lifespans were significantly shorter. Labrynithia. Autistic people have normal lifespans. You may be thinking of something like Down Syndrome, that is associated with serious health concerns. Autism is (mostly) just associated with neurological differences. Nine to five workday. And even for people with Down syndroe, that has (and is) changing for the better. In 1929, most people with Down syndrome lived to be 9., maybe 10 years old 18 years later it jumped to 12-15 years old. Today, 44% will live to be 60.
This is from the comments on a NPR article Jump In Autism Cases May Not Mean It’s More Prevalent.
Admittedly, I should really know better than to read the comment sections of things like this (AND EVEN
MORE TO I SHOULD KNOW BETTER THAN TO COMMENT WITHOUT TRIPLE CHECKING THE
NUMBER), but actually it wasn’t as bad as it could have been (and people didn’t even fuss about
 the number-typo).

And then I happened onto the NPR comments for this article and decided that maybe I will take an optimistic view that people honestly just don’t know that it is possible for autistic children to grow up (if you count lack of knowledge as the optimistic view). For people who don’t think about autism much, maybe it isn’t too much assumption that people with autism have significantly shorter lifespans. After all, it is compared to cancer and life threatening diseases so frequently. It is painted as a horrible horrible thing that tears families apart and it is full of doom and gloom and ominous signs. Maybe it makes sense then that people don’t realize that autistic children grow into autistic adults.

But they do.
Regularly and frequently.

And I think the world needs another quick reminder that autistic children grow into autistic adults. (And mostly, I want to tell everyone who posted something about autistic children today (well, I suppose they mostly posted about children with autism, technically) that autistic children grow into autistic adults. But I am not brave enough to do that, to publicly link my name with autism yet, with any sort of phrase or words where people who know me vaguely might hear and notice. I am not yet comfortable or confident enough in this new identity to tell people I know.

So I am going to tell the anonymous world of the internet, through a method not attached to my real name.

Autistic children grow into autistic adults.
Autistic children grow into autistic adults.
Autistic children grow into autistic adults.
Autistic children grow into autistic adults.

And here is just a brief smattering of some of the lovely autistic adults (well, blogs by autistic adults) that are out here on the internet. It is largely incomplete. I know there are so so so many more people that I have missed (and if you would like to be added to the list, or feel I have missed someone who should be on the list, just comment or email me and I can add you). (Or if you would like to be taken of the list, I can do that, too.)

(Some) Blogs by Autistic Adults

not knowing what feelings feel like

Emotions are hard. I don’t understand them. I can’t figure them out. There are very very very few of them that I can recognize in myself. I have written about this before, and it is something I still have so many struggles with. Alexithymia. It is one of the things I hate most about the way my brain works.

It would be so much easier sometimes to figure out how to fix things if I knew what was wrong.

For instance, right now.

I know something is wrong. My stomach hurts, but not in a throwing-up/sick sort of way. More in a tied-up-in-knots way. My brain is jumbled and going every which way. I have been lying on the floor for the past… hmmm well, it has actually been over 4 hours. But I have been watching Scrubs, so it hasn’t been all useless. [Lying on the floor, admittedly, in itself isn’t necessarily a bad sign. My family lies on the ground all the time (partially because we never had enough chairs in our family room growing up, so usually at least one person has to sit or lie on the floor.] I haven’t cried, and I don’t think I want to cry.

I don’t know what this is.

I don’t understand how people can just know that they are nervous or jealous or embarrassed or tired. I’ve tried asking people. No one can explain it satisfactorily. They just “know” that that is what nervousness “feels” like. It is extremely unhelpful.

I want to know what I feel like right now. I want a name for the specific emotions. Because when you can give things names, then it is so, so much easier to start addressing them. I want to be able to categorize and classify my emotions. Because identification and classification are the first step to fixing something.

I want to be able to answer boyfriend when he asks me how I feel with more than a “good” or a “bad” or a “not sure”.

I don’t understand how this works for other people. I know the temporary solution. It’s on my giant flow chart in my closet. I haven’t eaten recently (because it is 2:19 currently and I ate dinner several hours ago). I need to eat. And it is after midnight. I need to go to sleep. But those are both temporary solutions to a feeling that I have had since before dinner, before midnight. Admittedly, the temporary solution is what I need now, because it is attainable. But I want a fix. I want this to be fixed. I want there to be a way that I can understand emotions that are happening to me and name them, because that seems like a basic self-aware thing to be able to do.

I don’t have words for them. And I know there are words that exist for them. I even know what the words are. But I have absolutely no idea how to map them on to the actual experiences that happen or the actual sensations that I assume are emotions.

Roommate Rantings

Things I have only had moderate success with: getting along with roommates.

I’ve always lived with sisters, so I’m not quite sure the difference. I think because maybe you are allowed to yell at sisters and sometimes hit them and getting mad at them is okay. Because I certainly had problems with my sisters sometimes. But those were usually minor incidences. But this roommate issue isn’t because I am used to having my own room. Because I shared one for large portions of my life.

Sometimes it doesn’t work out well at all. Right now, it is ok. Not the worst roommate arrangement I have had, but not at all ideal.

I’ve lived with my best friend for a summer, and that worked out wonderfully. We each had our own rooms, and a nice big kitchen and baked lots of delicious things and watched a lot of cooking shows and House Hunters and Say Yes to The Dress together. She was an awesome roommate (I maybe not so much, admittedly, but we were still super good friends after, too.)

For one summer program, I lived in a quad in a dorm room with 3 other girls. My roommate was quiet and nice and very religious and gone a lot. That worked out pretty well. We sometimes hung out and she taught me how to make bread and nothing bad particularly happened. One of the other girls in the other room was especially awesome so I hung out with her more. (And then my friend who I lived with earlier was also on campus, so I spent a lot of time with her and that group of people.)

My freshman year of college roommate was also ok. We didn’t really talk much, because she had a long distance boyfriend, but we coexisted peacefully in the same space.

Sophomore and junior year roommate was bad. Same girl. I knew it would be bad and not work out but I couldn’t figure out how to say no because there wasn’t anyone else who would have lived with her probably. And junior year I had a high enough rank on the room-pick-list, I could have gotten a single, but she couldn’t have, so that would have also been mean. Sophomore year was ok, with drifting into bad. Like when she broke up with her boyfriend of less than a week and then ate all my birthday ice cream. And then it got absolutely horrible junior year. Part of it probably wasn’t her fault, admittedly. I think both of our lives were falling apart in different ways and two people who have lost control of their lives don’t really make good living partners.

Anyway, and now there is now.

Currently, I need to find a way to tell my roommate that sometimes I just want to not talk to anyone and it isn’t that I don’t like her, it is just that I am home and home is my quiet, not-talking-to-people place.

But I haven’t told her I’m autistic yet.
Because I’ve only told a handful of people.
Because it is sort of still a processing-thinking-secret.

And it’s tricky too, because she is one of my friends from college, I guess, so I think she wants to hang out. And her program is so much less aggressively social than mine is. Or really, social at all. So I get my social fill up at school and at work because everyone is very friendly and talks and chats a lot (about fun stuff, too! Like science and food! So I enjoy it.) And then I want home to be a quiet place. But she comes home from school lonely because the people in her program don’t really talk much and wants to talk and hang out.

And I don’t want to be mean but I just need to hide.
And also sometimes she is really annoying a lot but I feel mean and petty when I say that, but really yes basically it is true.

But sometimes I am fine.

But I also don’t want to be mean and tell her I don’t actually like hanging out with her because that is mean and what if my friends told me that and are actually only pretending to like me because they are being nice, so I should be nice also. (And also because this lease is through August.) Or tell her that she is boring and talks to her family too much and too loudly. Badbadbadbad.

As soon as this lease is up, I am getting a new apartment. One where it is just me.

So that I can go in the kitchen when I come home tired and hungry. Where I don’t have to hide in my room when I need to eat. But now, I hide until I know it is safe to leave. And I can’t make food that takes a long time, even though I like cooking, because the kitchen isn’t safe. I have no snacks because I can’t make any. So I’ve been making meals at 1:00 after she is asleep and baking things then, because that is when I know it is safe.

Because right now my room is the only safe place. Because people might talk to me everywhere else (And by people, I mean my single solitary roommate.)

And it is a bad day-week-time-period, so I am NOT okay with that. But you aren’t ALLOWED to yell at people to GO AWAY DON’T TALK TO ME when it is also their kitchen.

And she has an unpredictable schedule so I never know when I am coming home if she is going to be there or not. So when I plan my evening on my walk home based on the usual pattern of her being at home or not being at home, and then I walk in the door and she is there when I thought I would be alone, it breaks. I just sink and escape to my room as soon as I can and stay hidden as long as I can.

I can’t know until I have checked out the apartment and the rooms if it is safe to finally be sad if I am sad or tired if I am tired. Because that is only safe if I am alone (or with a very few specific people that absolutely does not include roommate).

Going home is stressful because I have to escape through the apartment to get to safety. 
Everything is bad.
Sometimes it is ok, but right now everything is bad.
Life is overwhelming right now.